Hamilton Health Sciences’ new patient data system won’t track demographic data upon launch

There are concerns from local advocates and health care professionals that Hamilton Health Sciences' new patient data system won't be collecting race-based data when it launches.
There are concerns from local advocates and health care professionals that Hamilton Health Sciences' new patient data system won't be collecting race-based data when it launches. Lisa Polewski / Global News

A new patient data system is about to launch at Hamilton Health Sciences (HHS), but some Hamiltonians say it’ll be missing some key demographic information when it goes live.

‘Epic’ is a $175-million system that will track a patient’s trip through the health system, including multiple care units, and aims to provide better patient care overall.

It’s totally digital, eliminating the need for paper records, and will launch with an app called MyChart, which will allow patients to access their own health records – things like test results, medications, appointments and summaries of each hospital visit.

It will also reduce the likelihood of errors because health-care providers will be able to access a patient’s file in one place. It will also mean that patients won’t need to repeat or remember their entire medical history every time they meet with a new doctor or specialist.

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Read more: Hamilton Health Sciences postponing surgeries, resuming transfers amid new ‘capacity pressures’

Rob MacIsaac, president and CEO of HHS, said Epic’s launch is the “largest patient safety and quality initiative” in the hospital system’s history.

“It will greatly improve the experience for patients, staff and physicians, and most importantly, enable us to deliver care more safely,” said MacIsaac in a release last month.

St. Joseph’s Healthcare Hamilton is already using the software and HHS says using a common platform will serve as an “important enabler of integrated health care” in Hamilton and the surrounding area.

The system will launch on Saturday, June 4 in the wee hours of the morning.

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However, Epic won’t be collecting race-based data right away, and the executive director of the Hamilton Anti-Racism Resource Centre (HAARC) has some concerns about that.

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“This is a unique opportunity in Hamilton for us to be able to collect demographic socioeconomic data that can help improve health outcomes in our communities,” said Lyndon George in an interview on Monday.

“As you saw during COVID, that information helps communities be able to advocate for the kind of vaccination clinics to specifically address those communities that were disproportionately impacted by COVID. And the studies right here in Hamilton by local physicians have said the lack of that data impairs the ability for there to be real concrete research behind this, and so they need more information.”

George has addressed a letter to MacIsaac, urging HHS to prioritize the collection of race-based data when Epic launches and citing studies that highlight the need for that data to reduce health inequity among marginalized populations.

Read more: Evidence of racism against Indigenous patients is growing: Is a reckoning in Canadian health care overdue?

Local health-care workers have also echoed George’s concerns.

“COVID revealed MANY systematic inequities and deadly health-care outcomes in racialized populations, particularly for Black and Indigenous folks,” wrote registered nurse Amie Archibald-Varley on Twitter. “We knew this because it was our painful lived experiences and because of DATA.”

Claire Bodkin, a physician who works with homeless residents and drug users in Hamilton, also stressed that collecting race-based data is crucial in order to identify and mitigate racism in health care.

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Cole Gately of the Hamilton Trans Health Coalition also said more needs to be done to address concerns about Epic using features that can reduce the marginalization of transgender patients.

“Trans, non-binary, and gender diverse community members are frequently deadnamed (a term for having your incorrect name used) and misgendered in healthcare interactions,” he said in a statement.

“Use of correct names and pronouns is an essential component of safe and equitable healthcare.”

Read more: Access to gender-affirming care ‘overly burdensome,’ says trans Nova Scotian

HHS responded to the letter by saying the collection of race-based data is a priority and that “resources have been set aside to support the necessary engagement, planning and training that is required to collect, use and manage this information safely.”

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“We’re committed to making this happen in the months following the go-live of our new hospital information system on June 4,” the statement reads.

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Dave McCaig, HHS’ executive vice president of corporate affairs, also addressed the “valid concerns” being raised by George and others in the community in a release on Wednesday.

When the Epic system launches on Saturday, he said patients will have the ability to “voluntarily” supply their race and gender information through MyChart – including the name that they actually use, along with the name that appears on their health card to prevent physicians and hospital staff from using the wrong name for a patient.

“Within a matter of months, or sooner if we are able, we will begin actively collecting this information as part of our standard patient registration process,” he said.

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He explained that collecting “all identifying data” wasn’t prioritized for the launch date because of the size and complexity of the project and that going live with the system is a process that will extend beyond June 4.

“Our first priority is to ensure everything is functioning as designed. We’ve focused all our energy on that goal. It is the safest and most practical choice for everyone.”

Read more: ‘I’ve felt discrimination’: Black leaders in the medical community call for change

George acknowledged that health-care workers have been working “tirelessly, day and night” to support the community and that he wants to be excited about the Epic launch, but said it sends the wrong message to racialized and marginalized communities when their concerns are dismissed.

“It says to communities that, when they’re waiting for the kind of treatment that they need at our hospital or the services that they need, this information can come at a later time. And it makes communities feel less-than.”

He said it would be helpful for HHS to share some information with groups like HAARC and listen to those on equity, diversity and inclusion councils when they say it’s important to prioritize race-based data.

“If you’re saying to someone here that you need surgery, and the patient says, ‘OK, so what does that look like?’ And you say, ‘Well, we’ll let you know,’ it doesn’t give them the reassurance they need that they’re in the right place, giving the answers that they want.”

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“So we’re saying, help us to understand what the path is forward, explain and involve community groups that will be impacted by this.”

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